Kidney impairment from mass on bladder, admitted, to ER and discovered there while waiting weeks for tests. They did a bilateral nephrostomy before he'd even had a biopsy done as the CClinic scheduled him almost 6 weeks from initial visit end of October/ Nov At the local branch of CC- ER, mass was discovered, then followed up with the biopsy he'd been waiting for on 12/11, and the nephrostomy. It seems that the lack of urgency frim the urologist allowed an aggressive cancer to get worse. We'd had a follow up visit to this urologist where his high PSA at 25 shot up to 48 five weeks later at the second visit, yet the doctor still did not demand an immediate biopsy and MRI. The dr. Said, "boy, you scared me", yet sent him home bleeding and in pain to wait til mid December. He still has no actual confirmation of malignancy which obviously he has; he will find out tomorrow. Nor does he have a Gleason score, and I am disgusted. I read nephrostomies are for end stage and I am beside myself. He is not aware of the implications of this. I fault the lethargy of the CC urologist for this as all the signs were there. Anyone have a bilateral that was reversed? Or is this a death sentence?
Nephrostomy/bilateral : Kidney... - Advanced Prostate...
Nephrostomy/bilateral
Oh my! I remember reading that exact same information after my dad was diagnosed and while he was still in the hospital. I was devastated! I want to tell you that it's not true. My dad was diagnosed in 2015. His tumor had grown so large that it had blocked off his kidneys and cause them to go into full kidney failure. He was so near death that the nurses spoke with us about hospice care! He had bilateral nephrostomy tubes in place and started chemotherapy immediately. He had the nephrostomy tubes in for over 2 months while undergoing chemotherapy and starting a hormone therapy regimen. He was able to have them removed and once he completed chemotherapy his scan showed vast improvements and is PSA continue to drop for years. It has been four and a half years since he had the nephrostomy tubes nephrostomy tubes in place and he feels wonderful. He is still on hormone therapy and is about to begin provenge immunotherapy. His oncologist believes that he should be able to stay on just hormone therapy for some time before beginning a second line hormone therapy at some point. He feels excellent! Works out everyday and is in good spirits. He is 78 years old.
Oh, THANK YOU! It was so awful to read that. I appreciate your reaching out. They now want to put stents in and bypass the ureters because this tumor is blocking them, so that he can dump the bags. We need more info though. Thanks again, Lynsi.
You're welcome! I remember when my dad was still in the hospital searching tirelessly on the internet and everything I discovered had terrible outcomes! But then I started looking into the dates on the studies and realized that they were very outdated. Please keep that in mind! In the last four years since my dad has been diagnosed, there have been so many advances in medicine! And in the time since all of that research that you read regarding the nephrostomy tubes has been published even more advances have been made so don't focus on those studies. As far as I'm aware there aren't any more updated studies regarding nephrostomy tubes. And honestly there aren't a lot of men who have had them! With that being said I don't think a person can determine the success or failure of treatment based on needing them. Once your husband gets the treatment he needs he will not need the nephrostomy tubes any longer! Do be aware that they can become dislodged and that it can be very painful! If your husband ever begins to experience pain, take him in right away to have the tubes checked! My dad's came dislodge twice in his two months with them and each time he had to be put back under while they replaced them. They were a hassle, that's for sure, but they saved his life! The only memory he has from them now are the scars on his back and perhaps some weaker muscles in that area from where the tubes were in place for so long.
Also, just to give you a sense of where my dad was, his PSA was 257! He is doing great these days! So there is definitely reasons to have hope! However I would look into getting a Urological oncologist on your team and dumping the urologist.
Lynsi13, thank you for the reply. Very good to know there's people out there who share what they've lived with each other. Its difficult navigating this new world where all the medical personnel speak fluent prostate cancer, and we are just learning this new complex language.
So much jargon to learn. It overwhelming. I think he’s in good hands at Cleveland clinic. My friend NP fisherman also goes there. You’re doing the right things. 🙏🏼
It worked for me. Got to shrink that dammed tumor down .
I welcome you to HU. We will tell you what the doctors won’t.You are not alone in your plight . I was the same almost five years ago..At 53 I had pc tumors blocking urethra and bladder. I had kidney failure. Like you I was under the care of a non attentive Uro’s office for five weeks waiting a biopsy after the doc returned from spring break with his kids . I was in I c u for just one week. Walked to the Uros office next to the hospital and got my stage #4, gl 4+4, t-4 which you might be also be ,meaning that the prostate has been breached with pc tumors.. they told me that no matter what I did Id was supposed to die six months ago.The uro said it didn’t matter what I did .But i did an all out holistic diet and nutrition advised by a natuturalpathic oncologist . I did high dose vit/c ivs twice weekly during that entire time I had the tubes in me. That was over a year and a half . The cath lab was a friend of mine. At two separate occasions I pulled my right tube partially out . Ouch immediate to cath lab . Not good . Once I was getiing out of the car and it got caught on the seat
Belt . The other was
As I
Left the house a door knob caught it as I went by. So don’t do those things .Here is my good news. I did double adt firmagon then Lupron until
Orchiectomy Allowed me to stop the Lupron Shots. I was non op like you probably are . I did 8 weeks imrt .I fasted two five hundred calorie days out of each week RT. The adt and RT shrank the tumors..I weened off of the tubes with internal stents for six months. My entire time I had severe uti’s and used heavy anti biotics for that year and a half . Not allowed to lift more than ten Pounds..I needed much help
Getting up , putting on my shoes . I went thru
Depression..I lost balance. Couldn’t stand on one leg in the shower..
It’s no cake walk ,andI wish this upon no human . I feel your pain..I’ve been there in that nightmare..The good news is that
It is possible to overcome this . Not without suffering and much effort ..After six months I had no visible signs of pc or Psa . I’ve stayed there for over three years years now.. It is possible to get those tubes off. I pray for that day for you .. That will be a great day ..
You can hit me up on the private chat button.. no subject is off topic . Ask questions and save yourself . Don’t listen to dismal stats . You can go better than those . I pray that you can escape this hell asap.. many prayers sent to you from Scott in Az ...🌵
..Hang in there 😎
Good informative Post (as usual) Lu......
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 12/12/2019 7:46 PM EST
Was off line and just saw your reply. Thank you so much for all the unfo. Ill add mire of my own as I am able. Very scary stuff, you helped me.
Hang in there. You can hopefully improve ..It’s hard to fathom unless you’ve lived it . I prayed for the day to get all tubes out . I’m now praying this for you ...🕊
Thank you!
How are you doing today ?
He's ok. I'm his advocate so any post is from me, Whimpy-p. I am all in on helping him navigate this. He is doing well right now(treatment at ClevClinic) and will have the bilaterals stented in March. I'm a bit concerned by that, but the tumor has shrunk thanks to the initial bicaludamide and now the lupron and abiraterone and prednisone have been added, so we'll see. The urologist thinks he will be ok stenting the urine through the bladder. I hope he's right, but I worry if it begins to grow again, it could block the exit to the urethra as before, then what? Nephrostomy bags again? They can't remove the tumor as its too complex and dangerous to the bladder and rectum. One day at a time, though. How are you? You're right, hard to fathom unless you've lived it, for sure!
I’m almost five years with apc and 31/2 without stints or tubes. I can not complain . We’ve got to pull him out of it also 😂😂🙏🏼
Thank God for you . Hopefully he can Shrink those pesky tumors and get all entrapments out of him . However that tumor you describe doesn’t sound too good . I’m sorry they can’t remove it ..Everything is so close together . I would not have survived without my wifes care taking of me . I was in horrible shape .I could ever put in m shoes alone or stand on one leg in the shower. I was off balance and dangerous to my self . I became shaky and accident prone. When I was neither of these prior. I m happy that he has you . Caring for one in this condition deserves great rewards in heaven . I had the stints during the last six months . Please keep your strength up . He needs you so .. I prayed everyday for a year and a half to be able to pee without brutal pain . Not kidding you. Every time I pee now I Thank God. We just don’t realize the importance of our urology until there is a problem .. Keep him up and positive. I think the stints can work. They helped me ween off the tubes . Is he staying free of UTI’s? That was my major issues . Scarfing the worst anti biopics like coprocessor and the lot. Three days after a foley w as changed uti, after stints in a week uti , it’s a scourge these infections. In the end I had exhausted all of the major anti booties . The only one that still worked was Bactria. It’s a nasty one too. I got slot of neuropathy from the constant ani biotic. Hope he’s not going thru that too. Thank you for caring for your friend.. This is true human kindness. I was terribly difficult on my new wife during
That time. They gave me 50/50 chance yo survive it . Thank you for your reply. I’m praying and pulling for him to improve greatly and get some time without such incredible misery .. 🙏🏼🙏🏼🙏🏼🕊 Be well......Scott
I lost my reply, Scott, so here's a new one. Thanks for your good words. He had terrible pain peeing, as you did. Not now though. I'm concerned, however, stents may cause peeing problems if this shrinking tumor decides to grow again soon. Dr. said it could, then sought to reassure, but, who knows. The stents will be put in, as I said somewhere, in March. The bilaterals have been so successful, no infections, normal urine and he does pee through his urethra as well. I hate to mess with a good thing!
Some of his lymph glands in the pelvic area have metastases, but nothing showed on the bone scan. When I asked his Clev.Clinic urologist if the shrinking tumor could be removed;he said: Not at this time, from which I took the implication that maybe there would be a time when it could. (Your right about the entrapment and how ghastly it is. )The Dr. said, too soon to speculate. So....as you know so well, you have the physiological effects of aggressive pc, to manage, but, lurking like a ghost above it all are the psychological effects that seem to really torment him. I sugested to him to try to lessen his unfocused resentment
and anger, yet like anyone, he is entitled to those feelings, and who am I to say cut it out. Being bogged down to a point where it creates unrelenting stress,canrelease stress hormones, which, in the recipe for cancer growth, is a huge ingredient. You're right too, about the difficulty visited upon others, as his projected anger flares up out of nowhere. To avoid conflict, I always suggest, never tell. I let him think about "stuff". If it works, good. If it doesn't, maybe later it will. Thanks again, Scott. I wish you the best.( Fyi, he's 55.)
Maureen
Somehow the tubes and such are demeaning .. No UTI ‘s is a major plus for him. Yes, we are supposed to be in zen mode ,calm and collect to heal. Adt and losing t drive me into rage , Anger, and depression. Suicidal ideations I had them all. I do understand.. 55 😂 .? .. I was then 53 ..My dr. told me at 53 that if I was ten years older that they would not even attempt this because I wouldn’t survive it. So maybe 55 will be in his favor . Also I was told that this wasn’t done even fifty years ago . I never knew this existed .. it was surreal walking with bags and tubes concealed under my garments. I felt somewhat alien to this world . Only my wifes love and patience got me thru. I had a syndrome like terrets were I’d yell and scream at the top of my lungs at my sweet passive wife. All for no reason at all. I dud damage to our relationship that I’m still trying to make up for . Peace to both in a nightmarish scenario.. Take care of self in this barrage . Thank you ...Scott 😂
Thanks, Scott. I hear you.
Not clear about what they wouldn't have attempted--the bilaterals or the stents?
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